Final Update on the Replacement Knee

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It seems like forever since I posted. It’s been a crazy couple of weeks with a huge project dropped in my lap (I wasn’t expecting anything until next month), a trip to Washington, D. C. for business and a full day in jury duty.

I did pretty well traveling on my own to DC. The knee is healing nicely (as is the back surgery) and the Cimzia seems to be keeping the worst of the RA symptoms at bay (although this lovely rainy fall weather we’re having in Dallas is giving it a run for its money).

But, about the new knee. It’s doing quite well. I’ve gotten to point, as I have with my new hip and shoulder, that I don’t really think about it any more. True, there are times that it does bother me and it still “clunks” more than I would like (meaning there is still some swelling/inflammation floating around), and occasionally for no particular reason, it seems to seize up. But all of those things are generally short-lived and not very intense when they do happen. So overall I’m quite pleased. I actually wore some 3-inch high heels to a wedding a couple of weeks ago without real issue (but don’t tell my doctor that!).

Here’s the latest picture taken just past the three-month post surgery point. As you can see, most of the swelling is gone and the scar is looking pretty healthy. There areIMG_0228 parts of the scar that have all but disappeared, which is a good thing.

I go see my doctor in a week or so, but unless there is something worth mentioning (which I hope there isn’t), I’m assuming that I’m on the downhill slope to total recovery and probably won’t dedicate another whole post to the knee.

I appreciate everyone’s interest and good wishes as I’ve gone through this process. Thanks for checking in.

Out with the Orencia!

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As I reported in recent posts, I had a horrible flare and my Orencia hasn’t seemed to be “kicking back in” after my recent knee surgery. After the flare, I moved up the date of my rheumatology appointment because I didn’t want to wait another month feeling like I have been. The appointment was today.

I had my labs done last week so my rheumatologist would have my latest blood work. My labs have always come back cold stone normal — even when it’s evident that I’ve got inflammation going on. It was the same today. My labs looked good, but it’s apparent that the joints in my hands, feet, elbows, knees and spine are all swollen and tender. That’s way too much inflammation to have if a drug is working, so it was apparent that the Orencia was not, in fact, working as it should.

Since I’ve been on most of the biologics (Humira, Simponi, Enbrel, and now Orencia), my choices are getting pretty limited. My rheumatologist suggested that we try Cimzia or Remicade. Since I’m really, really, really not into infusion therapy, I’m switching to Cimzia as of today.

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Cimzia comes in prefilled syringes. (The company says that the syringes have been designed in conjunction with OXO Good Grips to be easy for arthritic hands to use.) The dosing is front-loaded so you take two injections the first week, then two more injections two weeks later, then two more injections two weeks after that. After the course of double injections, you move to the “regular” schedule which is to take a single injection every other week.

So, since it had been long enough since my Orencia injection, my rheumatologist did the first two injections when I was in her office.

So far no bad side effects, although I had a funny taste in my mouth for a while after the injections which quickly faded.

Fingers crossed that this works and/or they come up with another wonder drug that doesn’t have to be infused if they don’t.

I hope whatever is new in your life brings you a smile. Thanks for checking in.

 

And wash your hands when you’re finished

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I have a good friend who happens to be an accomplished writer. She has, on more than one occasion, commented that writing is like using the toilet. It should be done in private and you should wash your hands afterward.

I have found yet another activity that fits in that category: searching for hand-washinghealth insurance quotes.

In addition to researching insurance policies for my husband’s company, I’ve been looking for my own coverage. Having been laid off last year, I have been covered under COBRA through my previous employer’s plan. My COBRA coverage extends through May next year, so technically I can stay on that plan for a few more months. However, I will have to switch plans when COBRA expires, meaning that I will have to start all over again on paying against deductibles, out-of-pocket, etc. with the new policy.

And while I could join my husband’s company policy as a covered spouse, there are similar reasons why that won’t necessarily work either.

Texas is one of the states that uses the national health exchange (www.healthcare.gov) rather than establishing its own. If you live in the US, you can’t have avoided all the news concerning the difficulty the site has had due to the overload of people trying to log in. While waiting for the logjam to clear so I could log in, I visited the individual sites for the insurance companies that seem to be common to my plethora of doctors: Blue Cross Blue Shield, Cigna, and Aetna.

Here’s what I’ve found:

  • If you are eligible for tax credits/discounts because of low income, you should visit the national health care exchange www.healthcare.gov to verify your eligibility. If your state has a health care exchange, you may also be able to do that there.
  • The individual insurance company sites are easier to access and easier to navigate than the national exchange. The quotes for the same plan are exactly the same on the national exchange as are offered through the insurance companies’ sites. Therefore, if you’re not claiming a discount/credit against health insurance costs, it’s probably easier for you just to go directly to the insurance companies’ sites.
  • Both the national exchange site and the individual company sites let you “save” and “compare” various policies. You can further filter the policies by such things as premium cost, HMO vs. PPO, etc. This helps narrow down the field to policies which might better fit your needs.
  • The good news is that plans starting January 1 cannot take into account prior medical history or existing conditions. This is a good thing for those of us with RA (and joint replacements, and high blood pressure, and high cholesterol, and/or other chronic conditions). So if you can wait until January 1 to start your coverage, it might be a good thing.
  • If you’re 30 years old and a non-smoker, you can find pretty good coverage for around $200 – $250/month. While a non-smoker, I’m no longer 30 years old, and the policies I’m considering are around $750 to $900 per month.
  • Be sure and consider all your medical costs when looking at a health policy. Because I have somewhere between 15 and 20 doctors appointments a year and I have about a dozen prescription medicines I take, I have to look at the cost of office visits and drugs as well as premiums — particularly since I take expensive drugs like Orencia which run about $2000/mo. It turns out that some of the higher-monthly-premium plans are actually more cost effective because they pay a higher percentage of drug costs and have lower office visit co-pays.
  • If you’ve been trying to get into www.healthcare.gov and have had issues, keep trying. I was able to log in and set up my account on a Wednesday evening a week or so after the exchange opened on October 1. I suspect that some of the initial rush is over and the government has been working to improve access.
  • You have until December 15 to sign up for insurance starting January 1.
  • The national site only handles policies that start January 1 when the new health care laws become effective. If you need insurance before then, you should visit individual company sites, or a private marketplace like http://www.ehealthinsurance.com.

At this point, I don’t know which plan I’ll choose, but at least I’ve got the information I need to make an informed decision. I’m appalled at the premium cost, but with my health, I know that the premiums are a small pittance against what I would be paying (or would be able to afford to pay) for my health care needs.

I hope that your insurance requirements are a simple matter. Thanks for checking in.

The way we were …

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I was in a shoe store last week with my husband. We were actually shopping for a pair of shoes for him (which is why a husband was in the store — as all the “wives” reading this roll their eyes). I saw Shoethis beautiful pair of heels and instantly fell in love. These are my kind of shoes. Even five years ago I would have bought them. They would have been paired with a sleek little suit for the office or something cute and cocktail-ish for a party. Regardless, I wouldn’t have walked out of the store without them.

However, a new hip and a new knee, along with RA in the joints of my feet, make it nearly impossible to wear 3″ heels. Ever. Again.

I do wear them probably a couple of times a year when there’s a particularly special occasion, but at the end of it, I’m always grateful to have them off.

You know, it’s not the big things in life I miss. I don’t miss my hip, shoulder, or knee which have been replaced. Those things hurt and I have assimilated the replacement parts as if I had been born with them.

It’s the little things I miss like not being able to wear really cute shoes all the time. Or not being able to run. And I don’t like some of the new things in my life such as never knowing how I’m going to feel in the morning. Or having to inject my self once a week — in the abdomen.

All of us who have RA have been robbed of certain things we love and been given dubious gifts in return. The worst gift of all is knowing that we will never, ever be truly well again. Even our best days are simply illusions which can and will be dispelled by the next flare.

But as dire as this sounds, all is not lost. Because without this sacrifice we wouldn’t stand a chance of ever finding a cure. If RA didn’t hurt, if it didn’t disable, if it didn’t kill, then no one care enough about it to find a better treatment or to search for a cure. And if I have to give up my shoulder, and my hip, and my knee to make it worthwhile for researchers to continue their quest, then I’ll gladly do it.

I just wish I could wear those really cute shoes in the meantime.

I hope whatever sacrifices you face today reap amazing rewards. Thanks for checking in.

When good people make bad decisions

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Okay, let’s face it, we’ve all made bad decisions at some time or another. The fact that I’m married to my (count ‘em) fourth husband is pretty much direct evidence that I have, in fact, screwed up at least three times in my life. (In case there’s any doubt, I believe I’ve “finally” made the right decision on the fourth one!)

I want to believe that most of us make those decisions with the best intentions. Unfortunately, however, intentions don’t count for a lot when the consequences come rolling around.

I finished my physical therapy sessions for my new knee last week. (It’s working pretty well, thanks for asking.) I was due to switch to fitness sessions this past Monday. The difference being that physical therapy concentrates on my knee and is paid for by insurance whereas the fitness sessions are geared to an overall workout and I get to pay for them myself.

On Monday, my therapist wasn’t well and the center contacted me to see if I wanted to cancel or reschedule with a different therapist. Since this was the first session where we were to establish the workout routine, I really didn’t want to work with a different therapist, so I opted to skip Monday and pick up on the next session scheduled for the following Wednesday. (This is not the bad decision. This decision, in fact, was pretty good.)

Tuesday I wasn’t feeling great. I was kind of achy all over — sort of like you feel when you’re getting the flu or, in my case, when you’re headed for a flare. Like a lot of us, I occasionally get a tender, swollen joint here or there. I don’t really consider that a flare. When I flare, I get the “stay in bed because it hurts all over and even turning over will bring tears to your eyes” kind of flare.

Wednesday came and I wasn’t feeling much better. If anything, I was a bit worse. However, I didn’t want to lose the momentum of going to the fitness/rehab center twice a week, so I decided to keep the fitness appointment. (That was the bad decision.)

Yep, Wednesday night and all day Thursday I flared. Not only did I have the hurt-all-over flare, throughout the night and day, I experienced severe piercing pains in various joints. It was if the RA god (if there is one) was alternately sticking an ice pick in one random joint at a time. First it was the ankle, then the shoulder, then the wrist and joints of the right hand, then somewhere else.

I’m fortunate that I don’t flare often and usually don’t flare for long. It’s Friday and I am doing better after a day in bed taking pain medication and extra NSAIDs.

But the point is, I might have avoided the whole unpleasant situation if I had just listened to my body. True, a flare might have been inevitable, but going through a whole-body workout routine for the first time no doubt contributed to it happening and to its severity.

If you have been following this blog for very long, you know that it’s peppered with advice to listen to your body and be good to yourself. I did think that working out was being good to my body, but I certainly wasn’t listening to my body.

I am a bit concerned not only that I had a flare, but that my RA drugs (Orencia and Arava) don’t seem to be “kicking in” like they should after my knee surgery. I’ve had three surgeries in the past year and each one has required that I’ve been off the drugs for about a month each time — two weeks before surgery and two weeks after. There is some discussion in the RA community that drugs don’t seem to work as well after you’ve been off of them and then start them again. I will tell you that my symptoms seem to be getting worse rather than better and this flare — the first in many months — is just icing on the cake.

My next appointment with my rheumy isn’t until sometime in November. I think I will take my own advice and see if I can’t get an earlier appointment to discuss this with her. I really don’t want to change treatment plans, but there is no sense staying on something that doesn’t appear to be helping.

In the meantime, I will try (as you should) to listen to my body and be good to myself.

Thanks for checking in.

Open access – not for everyone

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I was in the waiting room of one of the (many) physical therapy practices I’ve visited over the past several years when a couple came in to talk to the receptionist and set up some physical therapy visits. The couple had just moved to Texas and was apparently quite surprised to hear that they just couldn’t set up physical therapy visits (like any other healthcare provider), that a prescription is required. Apparently, many states have open access to physical therapists — which I happen to think is a great idea. A bit of further investigation (see previous link) indicates that access restrictions to physical therapists vary greatly from no restrictions (Alaska, for example) to convoluted (New Jersey to cite one).

I’m wrapping up my PT sessions associated with my knee replacement this week. I don’t believe in physical therapy just for the sake of it, but I do believe it has a valuable place in a health and wellness plan — particularly for anyone with RA. I’ve often thought that a visit with a therapist when I’ve had a specific complaint (such as hip bursitis) would be worthwhile to learn non-drug techniques to help resolve the issue. Unfortunately, in Texas, that requires a visit to a doctor to prescribe it, and it’s usually a full course of 30 days or 12 visits, and is often overkill for when you want/need something more than what a personal trainer at the gym can offer.

But what has happened is that my current physical therapy group (which is part of one of the major hospital systems here) is offering “wellness” visits. This is where you work with a therapist on wellness/fitness issues. It is not considered physical therapy and is not covered by insurance.

That being said, with three major surgeries (rotator cuff, spinal fusion, and knee replacement) within 10 months, I’ve lost a lot of strength and fitness. And trust me, I do not trust a 20-something physical trainer to understand the limitations of my three joint replacements, back surgeries, and progressive rheumatoid arthritis. However, I do trust my current physical therapist who has been working with me on my knee. So I have signed up for six weeks at twice a week to work with her. The goal is to formulate a program (both in the gym and in the pool) that will start me back on the road to wellness, helping build my strength and stamina back in a safe and sane way. It may not take the full six weeks to formulate the plan, but I figure if I stick with it for six weeks, hopefully I will continue the program after the sessions expire. I can always sign up for individual sessions when I’m ready to make a change in the future.

In researching this, I saw several sites that are striving for open access not only for Texans but across America. And while I agree that there needs to be some regulation of all medical professionals (to help avoid abuse), I am also a firm believer that important specialties like physical therapists are a valuable part of many people’s health care and should be readily accessible.

And if your state allows open access to physical therapists, you should take advantage of this opportunity when the need arises. Not all of us are so lucky.

Thanks for checking in.

More meds, fewer reservations

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So I saw my surgeon last week concerning my progress (or lack thereof) on getting the knee back to “normal”. As I told him, “I have confidence that one day my new knee will be as good or better as my old knee, but that day is not today.”

There are two main issues. One, the pain and swelling in the knee that continues after almost nine weeks after surgery. The second is a hyper-sensitive area that parallels the line of the internal incision along the interior side of the knee cap.

I really like my surgeon and we’ve been through a lot together. The main thing is he listens and he offers options. He may not do this for all his patients, but he and I have built a good doctor/patient relationship. He respects the fact that I want to participate in my health care plan.

He did go so far as to suggest referring me to a pain specialist that could do something with the nerves for the hyper-sensitive are, but I assured him that we aren’t there yet.

What we settled on was another Medrol pack to help calm down the inflammation, continued Mobic/meloxicam (NSAID), a nerve pain medication, and a steroid cream, as well as an NSAID gel I already have. So four more medications.

I agree wholeheartedly with this approach and it has yielded benefits in even the short time I’ve been on the new regimen. But heaven help me, I’m tired of taking even more medications.

I don’t know about others, but my RA doesn’t exist in a vacuum. With also having high blood pressure and high cholesterol and Sjogren’s and Reynaud’s and just being female, I take 10 prescription medicines (some of them multiple times a day) without adding these new medications. In addition, I take a handful of supplements and vitamins. I have the extra-economy size pill holders — one for the morning and one for the evening.

The good news (besides the fact the new meds are working) is that they are temporary. Once I get back on track with the knee, hopefully I can subtract those from my daily intake.

But even with the positive progress I’ve made, we’ve decided to cancel the trip to London. There’s a lot of walking to be done in London — most of it involving stairs, some involving cobblestone streets, nearly all of it without the advantages we enjoy in the States via ADA. I don’t want to go and not be able to enjoy the trip. There are a lot of other good reasons for cancelling and it comes down to the fact it’s the right decision to cancel. But it’s sad. We made the flight reservations almost a year ago so I’ve spent a lot of time looking forward to the trip. :-(

So progress continues on the knee. RA has generally, thankfully been quiet during all this time, which is always a good thing.

I hope whatever comes into your life today is also a good thing. Thanks for checking in.

Updates

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An email from my brother gently reminded me that I hadn’t posted in a while. I’ve been writing what I hope will be an interesting post, but I’ve been doing it in my head and since it hasn’t made it to real publication, I guess I can’t count it. And since I haven’t worked out the kinks on the “interesting” post, I thought I would provide an update which will, at least, appease my brother.

The question is, “If it’s not good news, does that make it bad news?”

I feel like progress on my knee has stalled. I seem to have reached a plateau in flexibility and pain. Tomorrow is eight weeks since surgery and I’m nowhere close to where I thought I would be.

I have made significant progress since the surgery, obviously, as I am able to get around without walkers or canes and generally get up and down from a sitting position. But bending my knee past 100 degrees is still very painful. And while I can walk on it, I can’t walk long or far without considerable pain. It also “clunks”. And it swells and gets extremely sensitive to touch. The swelling will be there for several more months, but I am hopeful that the pain and sensitivity go away soon.

Last week I went to Las Vegas with my husband who attended a conference there. I did very little except lay around the pool and read. However, our last evening there we were at the Shops at Caesars and decided to walk back to our hotel room at the Vdara, stopping in at the Bellagio to see what they’d done with their atrium display. A straight walk from point A to point B would be about 20 minutes. The distance is about 3-4 blocks. (Caesar’s sits on one block, Bellagio occupies the next block south, across the street from Cosmopolitan, which sits in front of Vdara.)

I was in so much pain by the time we got back to the hotel that I was almost in tears. I couldn’t get stretched out with an ice pack quickly enough.

The really bad news of all this is that we’re supposed to go to London next week (a trip we scheduled last October) and I don’t think I can make it. We’re probably going to cancel.

I have a physical therapy appointment today (Monday) and Wednesday and a doctor’s visit Wednesday afternoon. I’m going to talk to the therapist and also my doctor to get their opinion on the trip. It may be that the doctor can prescribe steroids or some other miracle cure to get me on my feet. If not, the trip will have to be postponed.

So the news isn’t the best it could be, but it’s also not terrible. We’ll see what this week brings.

And I hope your week brings a multitude of smiles to you and yours. Thanks for checking in.

Q that!

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Good news.

I saw my cardiologist (who has a much more robust/sophisticated EKG machine than my internist), and there is no Q wave on my EKG. We actually spent most of the visit on other topics (below) and I finally asked specifically about the Q wave report. He said there is no Q wave on the EKG. There is a “slow progression on the R wave, but no Q wave.” He was not concerned with the EKG.

I wasn’t concerned either until I got home and looked up what a slow progression on the R wave meant. There are a couple of common causes for this. The first is a myocardial infarction of the back of the heart (i.e., heart attack affecting the back of the heart). So I immediately panicked and felt like I was right back where I started from. The second concerns large-breasted women (check that box) because it’s difficult to get the leads placed correctly.

I finally calmed down and decided that I was seeing one of the best cardiologists around (he did the recent stent in ex-President George W. Bush’s heart and they try not to let bozos work on ex-Presidents). He’s also my husband’s cardiologist and so I know how conservative he is, having had him in our medical “family” for more than four years. If he didn’t think the situation warranted further tests or exploration, then I was going to trust him. And even though I’m an extremely skeptical and active participant in my health care, sometimes trusting the experts is the right thing.

He was seriously up in arms about my cholesterol levels (as mentioned in my earlier posts). My cholesterol has been over 200 since April 2010 and has sky rocketed this past six months, closing in on 300. (Yikes!) He looked at my (extensive) medication list and ask me where my statin prescription was and I explained that my PCP hadn’t prescribed one. To which he replied, “I will take care of that. We will not have you dying of a heart attack or stroke.”

I actually thought it was strange that my husband’s cholesterol has been in a healthy 100 to 150 range for several years while we eat basically the same diet (although mine’s probably a bit healthier). Then it was one of those “duh!” moments when I realized that, of course, he is on a statin which helps control the situation.

Being on a statin (and taking yet another prescription medication) was the last thing I wanted. For someone with RA taking a drug with potential side effects of muscle and body aches is not something that’s appealing. But diet and exercise have not reversed the trend and dying of a preventable condition is not acceptable.

So now I’m on generic Lipitor. I go in for lab work in a couple of months with the expectation that my cholesterol levels will be dramatically improved.

In other news, I’m continuing on with physical therapy for my new knee. It’s a slow, painful process. My knee still isn’t bending much over 100 degrees (it takes about 125 degrees to effectively get up from a sitting position). But no one said it was going to be easy. Some days are better than others. But when I look back five weeks to my condition right after surgery, I can see that I have made significant progress, so I have faith that there is light at the end of the tunnel.

I hope that what ever is at the end of your tunnel brings a smile. Thanks for checking in.

 

 

What the Q?

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Okay, now that I’ve updated you (probably ad nauseam) with my back and knee surgeries, I’d like to share with you what’s really on my mind. (I know. aren’t spinal fusion and total knee replacement surgeries enough?)

Imagine you’re me in the pre-op waiting room getting ready for knee replacement surgery. You have to get there two hours before surgery, most of which is spent just waiting interspersed with the occasional person who comes in and pokes you with something sharp. It’s a very stressful situation. You’re worried about the surgery. You’re worried about pain and recovery. You’re worried if your new knee will work as it should. You’re just generally worried.

The surgical center I chose has an internal medicine group that monitors your overall health while in the hospital. They come in during this pre-op time to discuss any concerns and let you know that they will be part of your medical team.

In this case, I had a very pleasant lady MD who reviewed my current medical conditions (including RA and Sjogren’s) and what health aspects would be monitored during my two-night stay at the hospital. Then she asked me when I had my heart attack.

Excuse me?

She said that my electrocardiogram submitted with my medical clearance showed a Q wave. A Q wave is basically the lack of electrical activity in the heart and this is normally caused by scar tissue (which does not conduct electricity) that is formed as a result of a myocardial infarction, i.e., heart attack. The EKG had been faxed so the information wasn’t very clear, but it clearly stated a Q wave was present.

Of course I was just trying to catch up on what a Q wave was and (on top of worrying about everything else) digest the fact that I might have a damaged heart and/or a condition that could be conducive to future heart attacks.

She went on to say that this appeared to be an artifact — which is evidence of a previous heart attack, not something that was occurring during the EKG. She went back and pulled my medical clearance from April when I had my spinal surgery and the same Q wave was also on that EKG.

She did go on to tell me that a Q wave associated with certain leads of the EKG are normal but because of the quality of the fax, she couldn’t be certain of which lead was associated with the issue. However, she encouraged me “strongly” to see my cardiologist to get checked out once I was recovered enough after surgery.

I honestly don’t remember having a heart attack, but I’ve also heard of mild or silent heart attacks where people don’t even know they’re experiencing one. I can think of a couple of times in the past year or so when I’ve had symptoms similar to those associated with “silent” heart attacks.

And of course, there is the whole RA-cardiac connection that is gaining more and more recognition in the medical community.

She also pointed out that my cholesterol was extremely high and I needed to discuss this with my PCP or cardiologist after surgery as well.

On one hand I am just reeling from all this news. On the other hand I am really upset with my PCP who did not proactively discuss this information with me prior to my finding out about it from a complete stranger.

But then they came in to give me happy juice and roll me into surgery so I didn’t have time to really process everything then.

I am hopeful that all of this is just a combination of a bad fax copy and an over-zealous internist. But just in case it isn’t, I have an appointment with my cardiologist next week. He will be able to take a new EKG and immediately see what’s going on. And if there is any question, we can do a stress test or other diagnostic procedures and really figure this all out.

In the mean time, I have one more, potentially serious, health issue on my mind.

Sheesh.

I appreciate you letting me vent all this stuff. I’ll be sure and let you know what the cardiologist says. Thanks for checking in.

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